When I try to save everyone, but the one person that really needs saving is myself.

♣

The excerpt above is a fragment of a burned out heart. Mine.

It is unfortunate that I have come to this point once again. And I hope that anyone reading this will somewhat understand that not all days are rainbows & sunshine; that it is as real as it gets & I do my best to portray the whole picture.

It is also unfortunate that I acknowledge my burnout state on Nurses’ Week. And decided to proclaim it on Nurses’ Day. I thought it would be an interesting change in the way we celebrate Nurses’ Day. To accept & recognise that it is OKAY to admit to the pessimistic side of nursing. Like how we should celebrate life: we accept the joys & sorrows both for we cannot have one without the other.

Despite this burnout, I only have the utmost respect & support for nurses everywhere.

For your willingness to keep going, no matter how bad things get.

For your strength to bear all the brunt, being at the front line more often than not.

For your heart & wellbeing, that so many have failed to take care of, leaving you to retreat in solitary to lick your wounds.

For your determination to do it all over again, every single day, in spite of knowing the consequences; because only you hold the key to what got you started in the very beginning.

This week, we commemorated the 3rd year of CAMIE’s existence, as well as achieving our milestone of 1000 days of restraint-free interventions.

It was such joy to be present in the celebration, it was an amazing pride to be part of it. Let me tell you why.

As you may already know, CAMIE means Care of the Acute Mentally Infirmed Elderly. A project started 3 years ago with a selected bunch of nurses to pioneer the unit. At that point in time, I was sure a number of us felt very uncertain about the whole thing. Was it doable? Were we fit for the job? What were we in for? But we’d never know unless we actually try, so we took a leap of faith and soldier on. Hand in hand, we took up the job of caring for people with dementia, at the same time nursing their acute medical issues. Being a fairly new nurse back then, I wasn’t decided if that was what I wanted to do for a long time. I wasn’t even sure of my life, heck. What more having the confidence in taking care of a whole lot of confused, delirious elderly.

But three years on, standing there in the midst of the festivity, I realised I have never been so sure in my life. That I have taken this calling to heart, and I know there’s nothing I’d rather do, or associate myself with. I am a proud geriatric nurse, and a very proud dementia nurse. We don’t always get the recognition we deserve & we certainly don’t always get remembered by our patients. The lessons I get from nursing every single person with dementia were more than enough to balance out the lack of acknowledgement. And the bliss that balloons up my heart when I get glimpses of the persons behind the disease, is indescribable. No words can define that great satisfaction.

It has been a crazy 3 years, like roller coaster rides, we won’t deny this. Nurses came and left, patients lived and died. Ironically, what I am really sadly happy about is how (only) a handful of us pioneer nurses are still around to savour the fruits of our labour. And what I am proud of is how we managed to convince a few more nurses of the pleasure of caring for people with dementia. It is from this ability to care for PWD, that we become even more capable & patient in caring for elderly in general.

And who would have believed it, we achieved what most people thought (or still think) we could not achieve. 1000 days (and counting) of restraint-free. We did it, we painstakingly did it. All it took was for us to be human, to empathise, and to willingly spend that time to resolve the problems. It also required creativity & patience. But most of all, it necessitates love. Can you see the love in our eyes in the photo above, lol.

Of course, there are the non-believers, the sceptics, the cynics. Until today, despite the 1000 days milestone, they still scoff at the possibility. They mock and they jeer at our attempts, and it is extremely disappointing that some of them were supposed to be our role models. It is also discouraging that I had to learn the hard way – that in this profession, not everyone celebrate our successes, our trials & tribulations. All we really want to do is to show you that impossible can be possible, that people with dementia can live well. All we ask is for you to respect that, the same way we respect your own set of skills and knowledge in your area of expertise.

These CAMIE angels are the most knowledgeable, understanding, loving nurses I have ever worked with in my entire life. I cannot be prouder to call them my comrades, my happy pills; and with them I am certain we can take on any challenges together. Our team’s support is something I treasure, we laugh & cry over cups of coffee to keep us going. And we mustn’t forget our lovely team doctors, all the other healthcare professionals & volunteers who have never fail to support us throughout. It is incredibly soothing to be able to share our thoughts and opinions with the team, knowing they won’t brush us off or take us lightly. Team work is essential, I learnt that from working with all these wonderful people.

So, thank you all. We wouldn’t have done it without one another. ♥

I hope our work inspires someone out there, the same way it had inspired me once upon a time.

Today, we received news that one of our ex-patient passed on last night; cause of death – sepsis.

Of course, we are used to deaths.

But we certainly did not see this one coming.

Mr. T had been with us for a fair amount of time, nearly a month. He had dementia, yes. He was this tall, rather huge old man who was still able to walk (with assistance) and was able to engage with us (even if he went off track sometimes). He was mostly pleasant & grandfatherly in some ways. He was also a very proud man. He liked his autonomy, and would be most displeased if you try to force something upon him. He was catheterised when he was warded with us, and was very protective of his urine bag. Although he did not exactly understood what it was, but he seemed to get that it was connected to him, therefore, it was his property. Try to take it away from his curious hands and you will come across a very grumpy man indeed who would tell you to mind your own business and go away. Often times, he successfully disconnected his urine bag and would simply refused to have us put it back. It also did not help that he had trouble processing information/instructions. We would be asking him questions/his permission to do certain procedures and he would most gladly nod with agreement – only to have him resist & fight you off the next second.

Despite all that, he was a quiet & gentle (when not provoked) man. His son was one of the nicest person we’ve ever met. His family were supportive and kind, and most of all, they were willing to take care of him, even when they do have other pressing problems within the family. They’re a rare gem in today’s society.

We patted ourselves on our back when we’ve finally managed to sort out care arrangements for Mr. T & family, and discharged him some time mid last week, thinking that he would be discharged well with no major issues. After all, he stayed for so long in our unit and he had been fairly well throughout. Little did we know that he would develop an infection over the weekend and then got readmitted. He deteriorated quickly and then death comes like a thief, silent and unexpected. I say unexpected although he was aged, because throughout his stay in our unit, there was never a need for a “what happens if and when Mr. T collapses/deteriorates/falls terminally ill” conversation. Which is why when we received this piece of news this evening, all of us who had taken care of him were shocked.

I still can’t quite digest the fact that Mr. T is gone, I can still picture him quite clearly in my mind, sitting on the geriatric chair, watching the TV. I can only imagine just how difficult it would be for his family now. Trying times for the family, indeed.

I forgot how old she is now, I definitely overlooked that bit. But she doesn’t look that old entirely. Small-sized & she’s got this adorable toothless grin that she gives on and off. Now in her advanced stage of dementia, she was also suffering from sleep-wake cycle reversal. But what sets her apart from my other patients, was the fact that she cried out, all the time, whenever she was awake. Really loudly too. And because she has limited vocabulary now, the one thing she can remember to say is: “Let me pee!”. Occasionally, she remembers other words like “Exercise!”, or “Sorry”. Occasionally. But mostly, “Let me pee!” is all you’ll hear her say. Or rather, cry out. And then she’ll wail really loudly.

If I can sum up this situation: imagine a baby. No. More like a toddler. A year old toddler, or slightly older. Crying for attention. But what this toddler is saying doesn’t seem to make sense of what she/he actually wants. It is exactly like this now with Mrs A. Everyone who doesn’t know her story thinks we’re mean nurses who ignore her pleas. We get shot with these looks of disdain, of “how could yous” and complete disappointment. Because while Mrs A. is busy shouting “Let me pee, let me peeee!”, we all know it’s not the bathroom she’s asking for. She was probably asking for many things, but definitely not the bathroom. For all we know, she could be hungry, cold, or even in pain – but we’ll never really know. It’s all guesswork.

When her eyes are closed, sometimes she looks like she’s at peace; other times, she looks disturbed. Like tangled thoughts in her head and she’s trying to sort them out. Or maybe, I’m the one who’s making it all up in my head. But that was how I saw it. I feel this sense of loss whenever I was nursing her. She doesn’t remember her children anymore, has vague impressions of her husband (because she apparently make small talks with him when he comes by), and she calls all of us, whoever who attends to her “aunty”. And she has this really pitiful look on her face when she cries, a look that screams out “HELP ME!”. It is that expression from her face – that lost, helplessness expression that gets me. Not the cries.

She was discharged, and then readmitted in less than a week. Her behaviour remained unchanged, if not a little better – not so much of continuous wailing like the last time. Again she was discharged; and some time within the month, again she was readmitted. This time she wasn’t under our care in the dementia unit, she was admitted in the general geriatrics. She still wails out and we all give a little chuckle, all too familiar with that sound. Only this time, I found her somewhat improved in certain ways. For one, her appetite picked up drastically. The first time we nursed her, she was too busy crying to want to eat. Now she can finish a good bit of her meals, and that kinda made me glad. She seemed to be more responsive, although still lost to the world. She would reach out for your hand, and give it a good kiss, before rubbing/caressing her coarse, roughened palms along your arm. Little acts of love she is still capable of.

Once, she was put on the geriatric chair and looking all cute, but actually crying out once in a while. And probably still dopey from all the medications, she placed her head down on the geriatric table when she got tired. It looked really uncomfortable. I couldn’t help but took her pillow from her bed on my way out, and offered it to her. I have yet to say anything to her, but she looked up when I approached her with the pillow and cried out a really loud “Thank you” to me before snuggling down onto the pillow. My heart melted. This is why I am here for. This is why I am still doing this.

Maybe all this time while she wails and shouts and calls out, and we go to them, helpless; she’s trying with all her might to tell us what she really needs.

The most we can do for her now, right now, is to sit by her. Keep her comfortable, keep her company. Hold her hand, give her all the attention she needs. Let her wail, let her cry. And occasionally we get that toothless grin that makes our spirits soar a little.

♦

Toodles. ♥

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Sometime last week, I made my patient cry. I was shocked, flabbergasted. This man is possibly one of my patients I would have least expect him to cry. Yet he did. It’s really not because I have done something extraordinary for him – I mean, I’ve only just brought him to the bathroom and back.

I had just about started my usual evening medication rounds when I realised Mr. Alfonso (this is the first name that popped into my head lol) had apparently gotten up by himself and was walking (pretty stably, I must say) with the aid of his walking frame. Obviously I left what I was doing to just watch him, in case he needs any help etc. So I started a conversation with him. He takes a tad bit longer to reply, you see. You can see the bubble thought in his head, trying to process what I’ve just asked him. He turned to me and said his legs are weak, he needs to walk real slow (completely irrelevant to what I’ve just asked him lol). And of course, I agreed, told him to take his time, I’ll be here if he needs me.

This is the thing with Mr. Alfonso. He’s pretty loud. He doesn’t have the most appropriate expressions most of the time. When he says things, his tone doesn’t match the intentions of his words, if you know what I mean. So he could be saying something really nice, but because he says it so loudly, and with this blank almost unreadable expression on his face, you’re not really sure if he’s actually angry or otherwise. Also, he is known for his hot-temperedness, so we usually take great care not to piss him off. Elderly can be pretty intimidating when they get angry, mind you.

So when he got back to bed, he sat on the edge of the bed, looked at me long and hard and decided to give me a pat on my arm. He then proceeded to say (slowly but really loudly, too) that I am a good person. And that was when he suddenly burst into tears and asked in between sobs, why am I so nice to him? At that point, I was thinking, ‘Oh God this is embarrassing, people must be thinking I’m abusing him or something.’ Had to give him some tender loving care and comfort him (just in case he was secretly depressed or something). He then abruptly decided that I am fit to be his granddaughter, after asking for my age. Which was nice, really really nice.

After I laid him down and reassured him to go to sleep while he pushed me back to work, I walked away amused, but slightly bemused.

When I first started nursing dementia patients, when I first committed myself to see the PERSON and not the disease, there was this quote that stuck with me throughout all these years that reminds me why I do what I do on a daily basis. Famous is this quote, you will know it I am sure.

I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel. – Maya Angelou

And in that very moment, it really hits home once again why I have always refused to allow myself to be burnt out by people with dementia.

Mr. Alfonso would have forgotten in the next half hour that he cried in front of this nurse who brought him to the toilet. He would also, in the next 5 minutes, request for his evening medications again even though I have JUST given them to him and he swallowed them all in front of me. He would too, forgotten that he had just peed and would want to get up to go to the bathroom soon again.

But the expression he gives me whenever he looks at me now – though it may be like he is trying to remember something he has clearly forgotten – stays with me. That slight smile of recognition that tells me that he will always remember, somehow. After that episode, for the next few days that I nursed & engaged with him, he had been most grandfatherly in every way possible – joking around, and definitely a hell lot more cheerful and pleasant than when he first came in.

And this is the amazing bit: even though he was the one who cried that one evening, but it was MY heart that he touched. :’)

People will NEVER forget how you made them feel.

Indeed, I will never forget how YOU madeME feel, Mr Alfonso. Thank you for reminding me why I am proud to be a dementia nurse. :’)

Mr. Alfonso went home yesterday. I didn’t get to say goodbye; but I sure hope he lives well, and that I will never see him in the hospital again.

♠

Hello, all.

I hope you enjoy the story I just unfolded before you.

Maya Angelou said, ‘There is no greater agony than bearing an untold story inside you.’.

(I’m starting to think Maya Angelou contributed a lot to the making of this post)

The story is real, by the way. I didn’t make any of it up. I don’t have to, honestly. My job gives me plenty of stories to tell, not forgetting the abundance of lessons one can pick up in each story. I have always wanted to share my day-to-day happenings because they can be really interesting, especially once I piece all the quirky bits together. Unfortunately, life always seem to get in the way. I get too tired and penning them stories down suddenly seem like a chore. I suppose in a way, I wasn’t ready to start writing just yet.

So why now? Coincidentally it is Dementia Awareness Week (17-23 May) and this year, it is all about having new experiences, hence #DoSomethingNew this week. To support this campaign, I am going to try starting something new – writing my stories, sharing my experiences nursing people with dementia, how they affect/change me, lessons learnt in the process etc. AND ACTUALLY BE CONFIDENT ENOUGH TO SHARE MY POEMS. I know I may have tried once, a long time ago, and failed because it became too much. But this time, let’s give it another shot. 🙂

Also because it is my birthday weekend, I think this blog deserves a new makeover, and a new post. This year I shall dedicate my birthday to Dementia Awareness Week. New direction, new dreams, new lip colour LOL.

Happy birthday, me. A year older, hopefully another year wiser.

I am even more convinced that my very existence is so I can “try to be a rainbow in someone’s cloud.” (Maya Angelou, again!!!).